Published March 1, 2019
Resource Library Search Results
Published March 1, 2018
2018 Neurological Rare Disease Special Report
Published March 1, 2017
2017 Neurological Rare Disease Special Report
Published February 1, 2016
2016 Neurological Rare Disease Special Report
Published August 23, 2024
Rare Disease Advisory Council – One Pager
Published November 15, 2024
Rare Disease Advisory Council 2024 Stakeholder Webinar Recording
The National Organization for Rare Disorders (NORD®) hosted this webinar for advocates interested in establishing Rare Disease Advisory Councils in every U.S. state. With the support of NORD, other patient organizations and stakeholders in the rare disease community, RDACs are enabling states to strategically identify and address barriers that prevent individuals living with rare diseases from obtaining proper treatment and care for their condition.
Published November 21, 2021
Rare Disease Advisory Council Stakeholders Meeting
Published January 22, 2021
Creating a Rare Disease Advisory Council in Your State
Published June 18, 2018
What Everyone Affected by a Rare Disease Should Know About the Orphan Drug Act
Published May 13, 2018
Policy 101: Role of Government on Rare Disease Policy
Published June 1, 2021
FDA’s Accelerated Approval Pathway: A Rare Disease Perspective
Published December 3, 2020
Orphan Drugs in the U.S.: Rare Disease Innovation and Cost Trends in 2019
Published October 21, 2020
How Does Data Sharing Improve the Understanding of Rare Diseases?
Published August 7, 2020
From Data To Cures: Speeding The Way For Rare Diseases
Published June 1, 2021
